Degeneracy is a poorly understood process, essential to natural selection. In the 18th and 19th centuries, the concept of degeneracy was commandeered by the colonial imagination. A rigid understanding of species, race, and culture grew to dominate the normative thinking that persisted well into the burgeoning new industrial age. A 20th-century reconfiguration of the concept by George Gamow highlighted a form of intraorganismic variation that is still underexplored. Degeneracy exists in a population of variants where structurally different components perform a (...) similar, but not necessarily identical, function with respect to context. The presence of degeneracy increases a system’s complexity and robustness against perturbations. The loss of a genetic component in biological systems, for example, can be compensated by redundant elements , or by degenerate elements . A historical survey of the use of the term “degeneracy” reveals how and why the processes it once designated, and the mechanisms it now represents, have largely escaped the purview of contemporary science. Despite confusion and general oversight, degeneracy has been characterized by select researchers at the molecular, genetic, and neuronal levels. The concept is a potent analytical tool to understand selection, variation, and transmission. (shrink)

Biomedical innovation and translation are increasingly emphasizing research using “big data.” The hope is that big data methods will both speed up research and make its results more applicable to “real-world” patients and health services. While big data research has been embraced by scientists, politicians, industry, and the public, numerous ethical, organizational, and technical/methodological concerns have also been raised. With respect to technical and methodological concerns, there is a view that these will be resolved through sophisticated information technologies, predictive algorithms, (...) and data analysis techniques. While such advances will likely go some way towards resolving technical and methodological issues, we believe that the epistemological issues raised by big data research have important ethical implications and raise questions about the very possibility of big data research achieving its goals. (shrink)

BackgroundBiobanks provide an important foundation for genomic and personalised medicine. In order to enhance their scientific power and scope, they are increasingly becoming part of national or international networks. Public trust is essential in fostering public engagement, encouraging donation to, and facilitating public funding for biobanks. Globalisation and networking of biobanking may challenge this trust.MethodsWe report the results of an Australian study examining public attitudes to the networking and globalisation of biobanks. The study used quantitative and qualitative methods in conjunction (...) with bioethical analysis in order to determine factors that may contribute to, and threaten, trust.ResultsOur results indicate a generally high level of trust in biobanks and in medical research more broadly. Key factors that can reduce perceived trustworthiness of biobanks are commercialisation and involvement in global networking.ConclusionsWe conclude that robust ethical oversight and governance standards can both promote trust in global biobanking and ensure that this trust is warranted. (shrink)

In this Symposium on the Ethics and Epistemology of Big Data, we present four perspectives on the ways in which the rapid growth in size of research databanks—i.e. their shift into the realm of “big data”—has changed their moral, socio-political, and epistemic status. While there is clearly something different about “big data” databanks, we encourage readers to place the arguments presented in this Symposium in the context of longstanding debates about the ethics, politics, and epistemology of biobank, database, genetic, and (...) epidemiological research. (shrink)

In this Symposium on the Ethics and Epistemology of Big Data, we present four perspectives on the ways in which the rapid growth in size of research databanks—i.e. their shift into the realm of “big data”—has changed their moral, socio-political, and epistemic status. While there is clearly something different about “big data” databanks, we encourage readers to place the arguments presented in this Symposium in the context of longstanding debates about the ethics, politics, and epistemology of biobank, database, genetic, and (...) epidemiological research. (shrink)

Foundational attitudes towards quantum theory have recently thrown off much of the old philosophical baggage largely associated with Niels Bohr to which Einstein famously objected, including the central ‘collapse of the wavefunction’ concept. A ‘neo-Copenhagen’ interpretation, it is suggested, has arisen. This development is placed in its historical context and contrasted to philosophical allegations of anti-realism. The neo-Copenhagen interpretation remains wedded to Heisenberg's uncertainty and observer-dependent values of particles. However a discussion of Nick Herbert's ‘rainbow analogy’ suggests that subatomic particles (...) are emergent from a ‘nonlocal’ level of reality outside the domain of space and time. Critical realism recognizes that emergent systems have an irreducibly ontologically character, and in its combination of epistemological relativism and ontological realism, provides a basis for the proposition that realists who support Einstein's objections must now recognize that their realism must be redefined. (shrink)

The case outlined below is the basis for the In That Case section of the “Ethics and Epistemology of Big Data” symposium. Jordan receives reports from two separate personal genomic tests that provide intriguing data about ancestry and worrying but ambiguous data about the potential risk of developing Alzheimer’s disease. What began as a personal curiosity about genetic inheritance turns into an alarming situation of medical uncertainty. Questions about Jordan’s family tree are overshadowed by even more questions about Alzheimer’s disease (...) and healthy ageing. As a parent, Jordan is unsure whether to share these results and what it would mean for their children to learn about their genetic inheritance and potential future health. Furthermore, Jordan is unsure how to make sense of these reports in light of current knowledge of the risk factors for Alzheimer’s disease and in the absence of effective treatments or robust preventative guidelines. (shrink)

A passionate defence of humanity and a work of radical optimism from the international bestselling author of Postcapitalism How do we preserve what makes us human in an age of uncertainty? Are we now just consumers shaped by market forces? A sequence of DNA? A collection of base instincts? Or will we soon be supplanted by algorithms and A.I. anyway? In Clear Bright Future, Paul Mason calls for a radical, impassioned defence of the human being, our universal rights and freedoms (...) and our power to change the world around us. Ranging from economics to Big Data, from neuroscience to the culture wars, he draws from his on-the-ground reporting from mass protests in Istanbul to riots in Washington, as well as his own childhood in an English mining community, to show how the notion of humanity has become eroded as never before. In this book Paul Mason argues that we are still capable - through language, innovation and co-operation - of shaping our future. He offers a vision of humans as more than puppets, customers or cogs in a machine. This work of radical optimism asks: Do you want to be controlled? Or do you want something better? (shrink)

With attention to the experiences, agency, and rights of tuberculosis patients, this symposium on TB and ethics brings together a range of different voices from the social sciences and humanities. To develop fresh insights and new approaches to TB care and prevention, it is important to incorporate diverse perspectives from outside the strictly biomedical model. In the articles presented in this issue of the Journal of Bioethical Inquiry, clinical experience is married with historical and cultural context, ethical concerns are brought (...) to bear on global health, and structural analyses shed light upon the lived experience of people living with TB. The relational and reciprocal dimensions of care feature strongly in these discussions, which serve as a poignant reminder that behind each of the yearly deaths from TB is a deeply personal story. No single discipline holds a monopoly on how to care for each of these people, but strong cases are made for support from mental health and social workers in addressing the kaleidoscope of needs in TB prevention. As the World Health Organization moves towards the goal of eliminating TB globally by 2050, attending to the needs of TB patients serves global interests to lower disease burden and to develop better integrated communities worldwide. (shrink)

Biobanks are increasingly being linked together into global networks in order to maximise their capacity to identify causes of and treatments for disease. While there is great optimism about the potential of these biobank networks to contribute to personalised and data-driven medicine, there are also ethical concerns about, among other things, risks to personal privacy and exploitation of vulnerable populations. Concepts drawn from theories of globalisation can assist with the characterisation of the ethical implications of biobank networking across borders, which (...) can, in turn, inform more ethically sophisticated responses. Using the China Kadoorie Biobank as a case study, we show how distinguishing between the subnational, transnational, supranational and extranational spheres of operation and influence can help researchers, institutions and regulators to understand and manage the ethical issues raised by the globalisation of biobanking. (shrink)

If James has a latent tuberculosis infection , he is at risk of developing active tuberculosis disease but he is not yet sick. LTBI is a liminal space between health and illness. Diagnosed with LTBI, James could be conceptualised as having a liminal body. Treatments for LTBI are available, but why would a person seek treatment for a disease he does not yet have? One thing is definite: James needs to be educated about the symptoms and severity of active tuberculosis (...) disease. (shrink)

The following note is based upon a re-examination of the binding, the quire signatures, and the enumeration of the plays of Euripides in L first made at Florence in 1948 and checked in 1952. Its purpose is to suggest that conjectures are still current about L and the exemplar from which it was copied, which cannot be regarded as sufficiently supported by good evidence to justify their retention; and to attempt some further clarification of L's relationship with the MS. Palatinus (...) 287. (shrink)

Dyskeratosis congenita is a rare skin and bone marrow failure syndrome caused by defective telomere maintenance in stem cells. The major X‐linked form of the disease is due to mutations in a nucleolar protein, dyskerin, that is part of small nucleolar ribonucleoprotein particles that are involved in processing ribosomal RNA. It is also found in the telomerase complex, pointing to an unexpected link between these two processes. An autosomal dominant form is due to mutations in the RNA component of telomerase (...) (hTR). Patients with this form of the disease are more severely affected in later generations that carry the mutations, possibly due to the inheritance of shortened telomeres, disguising the inherited nature of the disease in some cases classified as aplastic anemia. Because of the importance of telomerase in tumour formation and aging, study of this disease may provide important clues about these fundamental processes. BioEssays 25:126–133, 2003. © 2003 Wiley Periodicals, Inc. (shrink)

A defence of the Christian faith in the face of today's problems.

The availability of diverse sources of data related to health and illness from various types of modern communication technology presents the possibility of augmenting medical knowledge, clinical care, and the patient experience. New forms of data collection and analysis will undoubtedly transform epidemiology, public health, and clinical practice, but what ethical considerations come in to play? With a view to analysing the ethical and regulatory dimensions of burgeoning forms of biomedical big data, Brent Daniel Mittelstadt and Luciano Floridi have brought (...) together thirty scholars in an edited volume that forms part of Springer’s Law, Governance and Technology book series in a collection titled The Ethics of Biomedical Big Data. With eighteen chapters partitioned into six carefully devised sections, this volume engages with core theoretical, ethical, and regulatory challenges posed by biomedical big data. (shrink)

The availability of diverse sources of data related to health and illness from various types of modern communication technology presents the possibility of augmenting medical knowledge, clinical care, and the patient experience. New forms of data collection and analysis will undoubtedly transform epidemiology, public health, and clinical practice, but what ethical considerations come in to play? With a view to analysing the ethical and regulatory dimensions of burgeoning forms of biomedical big data, Brent Daniel Mittelstadt and Luciano Floridi have brought (...) together thirty scholars in an edited volume that forms part of Springer’s Law, Governance and Technology book series in a collection titled The Ethics of Biomedical Big Data. With eighteen chapters partitioned into six carefully devised sections, this volume engages with core theoretical, ethical, and regulatory challenges posed by biomedical big data. (shrink)

The text of Euripides' Troades depends mainly upon the versions preserved in two manuscripts, viz. Palatinus 287 and Vaticanus 909 . Both these manuscripts are well known and have been several times collated. Their importance in relation to one another and to the other existing manuscripts for the study of the text of Euripides in general has been frequently discussed and is no longer a subject of major controversy. The notes which follow are designed to put on record a number (...) of corrections to the readings ascribed to P and V for the Troades in the apparatus criticus of Prinz-Wecklein and later editors; and to correct and amplify the general descriptions of P and to call attention to certain difficulties in the current views of its relationship to Laurentianus xxxii. (shrink)